Having Trouble within the Family
During End of Life Care?

Resistance to Accepting Help

One of the most common problems families encounter may be the
resistance of the patient to accept help from other family
members or friends. Terminal illnesses gradually swallow up
one's capabilities to function, just as old age itself may
do. However, while some patients may gracefully adapt to the need
to accept help from others, others strongly resist receiving help
from the family and friends. Pride in having always been able to
do everything for oneself is common. However, a sense of modesty
and feelings of shame related to having others help with normally
private activities can interfere with getting essential
activities of daily living accomplished. Patients will
increasingly need to allow others to help them bathe and also
help with toileting at times.

Family members who have in the past been either adult children
of the patient or otherwise related may encounter difficulty in
helping the patient, even though that help is needed. There is a
time for all things, and the downward spiral of functioning
related to a terminal illness is one of those times. Patients who
are in denial of their impending death will often resist
receiving help from others, protesting that they can do things on
their own. Family members need to be firm, yet loving in
discussing these issues and making sure that the needs of the
patient are being met. When a patient is no longer able to
perform certain self-care functions, others must take on that
function to help.

The hospice social worker is especially trained and experienced
in helping patients and families get through this difficult
change. You can call the hospice social worker or speak with the
RN case manager to get the social worker involved. Family members
who are confronting resistance on the part of their loved one
need to be realistic in knowing when they need help in
communicating with the patient and resolving any resistance to
care.

Domineering Family Members

Dealing with the impending death of a family member is enough
of a burden to handle for anyone. But dealing with another family
member who is possibly abusive, domineering, insensitive or even
violating the law is another matter. In the majority of cases,
other family members support and help one another get through the
difficult process of helping the patient at the end of life.
Working together to provide care, comforting each other, running
errands and cooperating together to meet the needs of the very
difficult situation are the ideal.

Stopping Domineering and Abusive Behaviors

In some families, however, there are domineering family
members who may intimidate or manipulate other family members,
including the patient. If you are aware of a domineering family
member who has inappropriately taken control of the family
environment and patient care in your family, then you need to
intervene to protect your loved one, even if the perpetrator of
the abuse is another family member. If the domineering family
member has somehow obtained a medical power of attorney and is
forcing your father, mother or other family member into hospice
against their will, you can stop it!

You need to get an attorney involved right away for legal
advice. If they have called an ambulance to transfer the patient
into hospice unwillingly, you can stand there at the door and
tell them that they don't have the right to take your mother,
father or other family out of the house. If you "make
objections, speaking strongly and firmly, many ambulance
companies will back off because they don't want to get
involved in family disputes.

There are many families who tell us their loved one (usually
chronically ill, but not terminal) was put into hospice by some
family member who "took over the scene" and rushed it
through. They would give anything to go back and be able to stop
the transfer of the chronically ill patient into hospice, because
what happens (they tell us) is that the stable chronically ill
patient somehow died within two weeks! Usually they are given
morphine or strong sedatives which put them into a medically
induced coma from which they never recover, they don't get
nourishment and they die of dehydration or morphine overdosage.
Shocking, but sadly more common than one may think.

If the family member is simply domineering and abusing the
patient, speak with the hospice RN case manager and especially
the hospice medical social worker. Even if you are the
"soft-spoken" quiet family member who usually takes a
"back seat" when other family members make decisions,
you may be the only one able to help your loved one, if you
decide to act. You may even save your loved one's life from
an untimely death due to euthanasia, if you act promptly. In the
case that the social worker was refused by the domineering family
member, then you still have a right to request a visit or other
contact with the social worker, as a member of the family.

If the domineering family member is not providing needed care
for your terminally-ill loved one, you have the right to speak
with the RN case manager about your concerns in private, even
from another location where your conversation will not be
monitored and where you will not feel intimidated. The hospice RN
case manager and social worker can help protect a patient who is
being "controlled" or manipulated by a domineering
family member against his or her will. However, they can only
help if you bring these issues to their attention.

If you do not receive the assistance you feel is needed to
protect the interests of your loved one and the rest of the
family, you can speak with the hospice director, medical
director, the attending physician or spiritual counselor. Any of
these hospice staff may be able to help investigate or observe
the problems you are reporting and work with the RN case manager
or social worker to arrive at a successful plan that protects the
interests of your loved one and the rest of the family.

Getting Access to Information about End of Life Care

In the case where you feel you are being wrongly excluded from
information about the care or medications being given to your
loved one, you can request that information from the RN case
manager and social worker. If the patient is able to speak, he or
she can directly indicate that you are also to be informed about
details of the medications and care being provided by the
hospice. If they refuse to allow you information about what
medications are being given and you believe your loved one is
actually being euthanized, call the police and get an attorney at
once!

Dealing with Impending Euthanasia by a Family Member

While euthanasia is not usually committed in most hospice
settings, a small percentage of physicians do admit to performing
euthanasia. There may be a larger percentage that actually
perform euthanasia without admitting it. A very few nurses and
doctors have actually been convicted of causing death when
performing involuntary euthanasia. That some family members may
support euthanizing terminally ill patients is well documented.
Dr. Jack Kevorkian (now in jail) was a strong proponent of
euthanasia, and some family members, in certain cases, supported
his actions!

It is important to recognize that strong narcotic medications
which are given for severe pain at the end of life are
appropriately given for that purpose. The reduction of suffering
at the end of life is one of the main purposes of end of life
care. The mere giving of narcotics for pain is not euthanasia,
even if the patient dies while receiving the narcotics. In most
situations, the patient dies due to the terminal illness and the
narcotics were used appropriately to relieve suffering.

However, if you feel that medications are being given which the
patient does not wish to receive, does not need at all, or which
are being given in overly high dosages, you can speak to the RN
case manager, social worker, attending physician, hospice medical
director or manager. In some cases, sedatives are given which are
not wanted by the patient. If the patient has refused these types
of medications, then the hospice RN case manager is required to
respect the wishes of the patient himself. For more information
about hospice and involuntary euthanasia, visit our information center.

It is very important to communicate your concerns with the RN
case manager and your loved one's physician. By speaking with
the RN and physician, you can hear appropriate medical
explanations of the medications being given, why they are needed
and what the plan of care is for your loved one. If you truly
believe that euthanasia is about to be committed, already
started, or occurred, you can report that directly to the local
police, District Attorney in your County, to the State Attorney
General or to the United States Attorney's Office in your
city or region.

Of course, if you suspect that euthanasia is being planned or
even already started, you should also contact an attorney to help
your loved one in a time of need. Making your concerns publicly
known within the hospice setting to as many people as possible
may give the perpetrators of euthanasia reason to stop their
actions (to avoid prosecution for murder). You can speak about
your concerns to every hospice staff member who visits, to other
family members who might agree with your concerns and to the
police, and other government attorneys. You have the power to
prevent euthanasia or abuse by getting the help needed in the
circumstances.